Today is June 8, right? Yes, well then I have a little catching up to do….
Exactly one month ago, Elise seemed to have a "cold." She frequently develops "reactive asthma" or "reactive airway" symptoms when ill, so I decided to get myself an early Mother's Day gift….a pulse oximeter. Well….within 12 hours of my coming home with this new gadget, it showed a significant decline in Elise's respiratory status…..so concerning that I paged the liver/transplant doctor on call and left for the ER rather than waiting on a call back.
Upon arriving in the ER, her vitals were critical, and she was placed on "shock protocol." Believe me when I say….there was no waiting around. She was immediately triaged, and as soon as the triage nurse uttered the words "she's shocky," we were put in an exam room and quickly greeted by the ER attending physician, all available nurses who were simultaneously completing assessment, drawing labs and cultures, and starting IV fluids, the radiology tech w/ a portable x-ray machine, and a respiratory therapist who was taking a nasal wash sample for viral studies and starting Elise on oxygen.
Her WBC (white blood cell) count was 17,000, and her chest x-ray showed pneumonia with a collapse in the left lower side of her lung. Her urinalysis and urine cultures were also positive for a urinary tract infection. She spiked a fever, which was > 102 by the time we arrived in the ER, and her temperature did not respond to the oral Tylenol given upon admit, so she was given IV Tylenol, approved by the liver doc. IV antibiotics were also started. Given her immunosuppressed status, she was admitted by the liver/transplant team critical care team to the PCU.
Here is the blurb that I wrote on Facebook on May 12…
Later in the day on May 12, I was able to meet with the liver team, and we reviewed Elise's liver panels. Her liver enzymes showed significant improvement since beginning the IV antibiotics, so my thought was that maybe this respiratory infection has been brewing for several weeks, and this has been the problem with Elise's labs! Liver team agreed.
Mother's Day came and went while Elise and I remained at TCH. David visited with Ethan each day, and my Mother's Day present was a small/portable size Keurig coffee maker and K-cups!! I mean….I have to say this is BRILLIANT! I have frequently complained about the coffee available on the floor….and it's not always easy or affordable to take a walk to the Starbucks. I planted this idea in David's head, but I must credit my "liver-mom-friend," Dorothy, with this notion. I remember visiting Dorothy and her baby boy, Jason, and noticing the Keurig machine in their room. I was literally stunned and could not believe that I had not thought of this after more than 20 admissions to TCH in the past two years.
Here is the blurb that I posted on Facebook on March 13….
March 14….Elise started the day being given a trial without supplemental oxygen. And she ended the day discharged home. Prior to discharge, I mentioned to the resident MD that I was suspicious that Elise was about to spike a fever, as her face appeared flushed. I was assured that this was probably just a side effect of the IV antibiotics. Hmmmm……
On May 17, we were on our way back to the ER at TCH. Elise's temperature spiked to 102.2, she was not urinating, and her oxygen saturation was again dropping. Liver team wanted her back in. Her chest X-ray showed more inflammation than it did previously, so she was re-started on the IV Vancomysin and Zosyn….and an additional antibiotic was started….Azithroymsin, which treats mycoplasma pneumonia. She was also of course put back on supplemental oxygen.
May 18…. David took over with Elise at TCH, and I went home to spend time with Ethan. I hated leaving the hosital…ahem….I hated giving up control of the situation….but I really didn't have another choice. David happened to be scheduled off the next day, and I need to work whenever possible to preserve my available PTO days for when I really need to take them. So I swapped off with David, returned home with Ethan, and brought Ethan out on a Mommy-Ethan date to Chuck E Cheese!!
On May 19, Elise was discharged in stable condition, to continue oral antibiotics, and Daddy brought my baby girl home!!
Since Elise has been home, she has been doing GREAT! During her hospitalization, one doctor mentioned the possibility of acquired tracheomalacia as possibly triggering Elise's respiratory issues. My first though was "no," but then I am prone to denial….so after a little research and discussion with Elise's primary hepatologist, Dr. Fishman, transplant coordinator, Sarah, and pediatrician, Dr. Pocsik, I decided I would feel most comfortable with a pulmanology consult…..as soon as possible. So we have an outpt appointment scheduled with a TCH pulmonologist, Dr. Farber, on June 10.
Exactly one month ago, Elise seemed to have a "cold." She frequently develops "reactive asthma" or "reactive airway" symptoms when ill, so I decided to get myself an early Mother's Day gift….a pulse oximeter. Well….within 12 hours of my coming home with this new gadget, it showed a significant decline in Elise's respiratory status…..so concerning that I paged the liver/transplant doctor on call and left for the ER rather than waiting on a call back.
Upon arriving in the ER, her vitals were critical, and she was placed on "shock protocol." Believe me when I say….there was no waiting around. She was immediately triaged, and as soon as the triage nurse uttered the words "she's shocky," we were put in an exam room and quickly greeted by the ER attending physician, all available nurses who were simultaneously completing assessment, drawing labs and cultures, and starting IV fluids, the radiology tech w/ a portable x-ray machine, and a respiratory therapist who was taking a nasal wash sample for viral studies and starting Elise on oxygen.
Her WBC (white blood cell) count was 17,000, and her chest x-ray showed pneumonia with a collapse in the left lower side of her lung. Her urinalysis and urine cultures were also positive for a urinary tract infection. She spiked a fever, which was > 102 by the time we arrived in the ER, and her temperature did not respond to the oral Tylenol given upon admit, so she was given IV Tylenol, approved by the liver doc. IV antibiotics were also started. Given her immunosuppressed status, she was admitted by the liver/transplant team critical care team to the PCU.
Here is the blurb that I wrote on Facebook on May 12…
Waiting on docs to round, so no "official word" yet. Between not eating in 24 hrs and doing my crunches all night to see her monitor each time it alarmed, I'm tired and very sore. Lol. Elise is still on 10 liters o2 high flow with o2 sats sitting at about 92%, occasionally dropping to 90%. Heart rate and temp are much improved though. She's still breathing fast, in the 40s. They are monitoring her closely- we are still in the PCU. Labs from this morning are still pending. None of her cultures or viral studies have come back positive to my knowledge. So currently we have the pneumonia, collapsed bottom left lung, and possible UTI. She is on 2 IV antibiotics including Vancomycin and fluids. Her output seems adequate though I am interested in her actual kidney function on her labs.
Later in the day on May 12, I was able to meet with the liver team, and we reviewed Elise's liver panels. Her liver enzymes showed significant improvement since beginning the IV antibiotics, so my thought was that maybe this respiratory infection has been brewing for several weeks, and this has been the problem with Elise's labs! Liver team agreed.
Mother's Day came and went while Elise and I remained at TCH. David visited with Ethan each day, and my Mother's Day present was a small/portable size Keurig coffee maker and K-cups!! I mean….I have to say this is BRILLIANT! I have frequently complained about the coffee available on the floor….and it's not always easy or affordable to take a walk to the Starbucks. I planted this idea in David's head, but I must credit my "liver-mom-friend," Dorothy, with this notion. I remember visiting Dorothy and her baby boy, Jason, and noticing the Keurig machine in their room. I was literally stunned and could not believe that I had not thought of this after more than 20 admissions to TCH in the past two years.
Here is the blurb that I posted on Facebook on March 13….
Worst night we've had in a long time last night. Elise was extremely agitated, ripped out her IV and repeatedly pulled off leads and o2... She kept de- satting and took a few steps back on her o2 wean... Around 2 am after second back to back round of albuterol, she really went nuts. At that point I requested to speak to the attending ICU doc and discussed my concern that this was all being caused by the albuterol, and that we should switch to Xopenex which is what she is prescribed at home, and that's in her medical record here. He agreed and changed the order. Since 4 am she had been doing much better... Much calmer and down to 5 liters o2. ICU team says she is better, but not out of the woods, and probably several days or a week from being able to return home. ICU doc took a second look at the chest X-ray on my cell phone from March (when she swallowed the penny) and had me email the film to him so that he can do some comparisons and possibly consult pulmonology to look into whether there was a pre-existing issue with her left lung that could have exacerbated this whole situation. Waiting on today's word from liver team which will include a review of her labs.
March 14….Elise started the day being given a trial without supplemental oxygen. And she ended the day discharged home. Prior to discharge, I mentioned to the resident MD that I was suspicious that Elise was about to spike a fever, as her face appeared flushed. I was assured that this was probably just a side effect of the IV antibiotics. Hmmmm……
On May 17, we were on our way back to the ER at TCH. Elise's temperature spiked to 102.2, she was not urinating, and her oxygen saturation was again dropping. Liver team wanted her back in. Her chest X-ray showed more inflammation than it did previously, so she was re-started on the IV Vancomysin and Zosyn….and an additional antibiotic was started….Azithroymsin, which treats mycoplasma pneumonia. She was also of course put back on supplemental oxygen.
May 18…. David took over with Elise at TCH, and I went home to spend time with Ethan. I hated leaving the hosital…ahem….I hated giving up control of the situation….but I really didn't have another choice. David happened to be scheduled off the next day, and I need to work whenever possible to preserve my available PTO days for when I really need to take them. So I swapped off with David, returned home with Ethan, and brought Ethan out on a Mommy-Ethan date to Chuck E Cheese!!
On May 19, Elise was discharged in stable condition, to continue oral antibiotics, and Daddy brought my baby girl home!!
Since Elise has been home, she has been doing GREAT! During her hospitalization, one doctor mentioned the possibility of acquired tracheomalacia as possibly triggering Elise's respiratory issues. My first though was "no," but then I am prone to denial….so after a little research and discussion with Elise's primary hepatologist, Dr. Fishman, transplant coordinator, Sarah, and pediatrician, Dr. Pocsik, I decided I would feel most comfortable with a pulmanology consult…..as soon as possible. So we have an outpt appointment scheduled with a TCH pulmonologist, Dr. Farber, on June 10.
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